when mum went to bed tonight she could not remember where her bedroom was , and put her false teeth in her glasses case, heartbreaking!!

Wish I could sometimes just have my " old mum" back just so she knows how much I love her. Sometimes when her carer goes home she clings to her and asks " when will I see you again" as if the carer is the most important person in her life!

Just having a silly moment, will be better in the morning, I know that others have much more troubling times ( Spaw and Charlie etc etc )

Just thanking the gods and stars for the Rainbow crew, I know you share tears and smiles together.( Nigel, wonderful news , waiting to hear the new music, and so wanting to meet you and Ann at the beach hut even in the east coast autumn winds)

Better go to bed.

fondest love and loving thoughts

Wendy

xxxxxx

ps Billy is much better after 4 weeks of a rotten virus, if I can get a new passport we are hoping to plan a week away and have been recommended Cape Verde islands ????

"Just having a silly moment" No you're not, Wendy; you're having a moment that would make any normal person very sad. I bet a bunch of us would wish to be able to give you something better than "virtual hugs". Hope the getaway trip works out for you, and good to hear that your main squeeze is doing better. Don't know anything about those islands, but I do have a weakness for going to islands.

Lifting the Crew of Good Ship Rainbow up on this sunshiny Sunday morning. I am feeling much better. Only the little niggling cough I had prior to the flu strike. Yesterday, I did much housework and today will resume while the energy lasts. Right foot only got a little swollen yesterday, probably because I was moving around most of the day. But feet hurt like crazy last night and kept me awake. Don't care. Feeling good about getting flat sorted out, clean and tidy before the winter blahs set in.

Am standing in the pancake line as I type (not easy when you're as cakhanded as I am!). Some lemon juice, but no sugar please. VT, it's heartwarming to read such an upbeat, energised post. Please keep back some of your energy, just for yourself, something personal & totally self-indulgent! Wendy, have sent a PM re. meeting. Sending everyone sunshine & warmth from London. It's beautiful outside today. With Love, Nigel & Ann xxxxxxxxx

Wendy what you are going through with your Mum is heartbreaking indeed. Makes me miss my Mamma so much. She is still cognitively all there at 86 years. But she is an ocean away.

My daughter Hilary has been through some major life changes. Turns out the fiance was not a very nice person at all and may have been contributing to her illness by way of causing her much stress. She has not moved far away into very sunny warm clime and in with friend from university. She has a job that is paying very well and says she is happier and feeling physically better than she has in over a year.

This news may be contributing to me feeling better. That stress stuff is a reall killer.

Tam, your news is good and I'd like to see it get even better. Your scrolling messages are a delight. I have no idea how you create them and doubt that I would understand an explanation! Oh, and I'm bringing real maple syrup for those pancakes.

I'm glad some of you are enjoying sunshine. It's drab and misty here today. I was supposed to take a twilight evening cruise, not on Jane's Rainbow but on this https://schoonerargia.shutterfly.com/ , but because of the weather the cruise has been rescheduled.

I woke to the sound of wind and rain. Shuffled to the hob and put on a pot of tea. Looked out back at the pines being shook back and forth by the wind and a thought gently edged it's way into my semi-conciousness. CRAP! I raced out into a torrent of a million drops of wind blown rain and ran... walked as quickly as possible... to my Early Girl, gently picked her up and deposited her in the garage, picked up the fruit from where she had lain for Dog knows how long and returned to the warmth of the kitchen. Brekky shall be a bacon and tomatoe sandwich. I wish you all could join me.

Ol' Spaw sends out his absolute best along with happiness for all and with a special one today for Wendy. Our favorite double caregiver needs a boost I think. Truthfully Wendy, I don't know how you do it! Take good care of yourself please. I feel for your Mom's situation. Alzheimer's is a cruel disease.

I'm freakin' great....at least for another week before I get to bitch, piss, and moan, about the side effects of Vidaza. Ten days of crap but worth it as my numbers and feeling better prove.

And finally, if you don't know Amergin you've been missing out. He's a wonderful, hairy, tattooed beast of a man with a heart of gold and the soul of a poet.

Looks like we need more coffee.....or at least I do. Never reallu got into tea.

Saw a new RA consultant nurse today. My inflammation markers are sky high. Everywhere she touched screamed with pain. She is sending the paperwork for funding for me to start Golimumab. Will take 6 to 7 weeks to come through at which time Healthcare at Home will contact me to deliver meds and arrange for nurse to visit and teach me how to self inject.

She said something that no other doctor or nurse has told me. That the heart pain and problems I am having may well improve with the new meds as immune system is not merely attacking joints. It attacks organs too. Which I knew from reading but as no one seemed to want to listen to my complaints about anything other than joints, I just let it go. Assumed it was not showing in bloods that I was as sick as I felt.

So looking forward to end of November to see if this new treatment will make me feel better.

Sending sunshine that follows rain to all on board today. I'm happy for those getting medical care and seeing the possibility of a holiday.

I startled my husband by laughing out loud at the irony of it as I checked online for the level of health care tax credits we'll qualify for; we are too poor to get any help with the required health insurance. Nothing. Zip... so I reckon we can't have any more health care. That means we'll be healthy, right?

As for all the other posts, I have just spent three days in one day dealing with shite and, while having read the other posts and feeling I wish to commiserate with each and all, I just don't feel up to more than saying... I wish I could help all and sundry. I gotta go wring out my misery. Today sucks but it will be tomorrow soon if I can sleep this sum bitch off. gnightgnu.

Not happy for Maeve. Surely Medicaid should pick up where the ACA doesn't apply. But I read of similar situation with friend of daughters. She is 31, full time employed working with horses at very small stables in Virginia. Does not earn enough to get tax credit and is not eligible for medicaid. Is this a state by state problem where medicaid has not been extended?

Hello everyone. I am feeling tired but determined to go back to work tomorrow, though husband thinks I need another week off to recuperate from that flu. Yeah I am still coughing.

Thanks for all your concerns and love, but at least I have my health,and yesterday I closed the salon, took a day out and went to the beach hut. It was the most beautiful sunny day and I was the only person down there. Had a good friend join me for an hour and coffee and cakes! Then I sat in the hot sun and read a good book, watched the golfers in the distance and listened to the sound of the sea.

So got home feeling recharged and ready to get on,Billy is feeling so much better, my brother saw the heart consultant who is pleased with his progress, mum saw the Dementia nurse who says for someone with such advanced Alzheimers she is contented, happy and very well looked after, so I guess that is a compliment?

We hope to plan the holiday for January, subject to live in care for mother being arranged and the Cape Verde islands are certainly looking like first choice.

So on the whole my life is fine compared to most of the crew, sailing on, and sending all my love and positive thoughts to all,

A horribly hurried check-in. Rushing between hospital appointments (routine, but far too frequent ) & looking after our two youngest grandchildren (who live 60 miles away). Barely time to stop for a cuppa! Much Love to You All, Nigel & Ann xxxxxxxxxx

Tamara, I often think of you. I have some idea of what it is like to live with these still little understood auto-immune disorders from friends and clients. A cascade of issues, and what treats one symptom often makes another worse. Spaw, I'm glad you are doing well, or were at last post. Wendy, Tommy and all others, sending light and love.

In the gospel workshop at the Getaway, some one led us in a hymn I had not heard before, "There are Angels Hovering 'Round." Beautiful spontaneous harmonies arose on the chorus. When people come together in community to offer care, concern and support, we are as angels hovering 'round one another. When people row together, or join together in song, we realize our connectedness to one another and the great web of life. I am grateful for all this community, and especially to all of you who share so freely of your experience, strength, struggles, pain, hope and acceptance.

I managed to post on Charlie's thread yesterday & so wanted to post here too, but MC went awol. Anyone else have problems yesterday?

Janie, your words go straight to my heart. I'm imagining all of us hovering around Charlie & being with his belovéd Ann. I've said before that I'm not a 'God fearing man', but Janie you've struck a powerful chord, deep within me...powerful images that are impossible to ignore. Tears are coursing down my cheeks for Charlie, for Jane, for all my Dear Departed & for the whole Crew's Dear Departed too. Much Love to You All, Totally emotionally overwhelmed, Nigel. xxxx

Oh yeah... 36 seconds in...sniffygnu had ta pause the YT vid. I said my piece on Charlie's thread. I hope that, if he wants to join this thread, he does so in his own time. I am sure this thread will endure until then and far beyond. How can it not, given such a compassionate, caring membership?

Sorry to anyone who might feel my last post flippant but a simple refresh of this page after it has fallen off the page is, perhaps, more so. I didn't post yesterday because I didn't have anything to contribute and not because it was down... it was up when I looked in.

Carry on. Smoke em if ya got em. Pass the tissues. I need more than one.

How's the crew? I'm sailing along. Literally. I was on a two-hour cruise on a gaff-rigged tops'l schooner this evening. By far the largest ship of sail I've ever sailed on. I wish all you all could have been with me.

Billy and I took his son Paul ( my stepson) to my son's theatre in Great Yarmouth on Saturday. Christopher is the general manager of St Georges Theatre, worth a look if you google it. We saw Stephen K Amos, we don't usually go to comedy nights but it was Paul's choice for his birthday. So glad we went, my face still hurts for laughing so much.

Mum was looked after by a very good friend and was very happy, so we are gradually getting a social life back with the generous help of others.

Today my best thoughts go out to Linn and Tom (Bat Goddess & Curmudgeon) and hope they find some peace in the current situation. Time is finite for all of us but although we pay lip service to that, we sometimes can't really see it til it is driven home. All my best to them.

As for me, I feel as good as I have felt in better than over a year! I'm on Day 2 of my eighth round of Vidaza and this time the side effects are once again different but somewhat the same. Best thing is the Vidaza appears to be working with better numbers as we go. A few days after the chemo week is over the worst of it clears and I start feeling better again. The worst days are Friday thru Sunday. This week we get to celebrate our anniversary Friday and I'm sure we'll just have a barrel of fun!!! Oh well......we celebrate something every day as I'm blessed with a spouse who is my best friend. Damndest thing is that she says so too........go figure.